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This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.
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What are the major symptoms of celiac disease?
Celiac Disease Symptoms
What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic)
Celiac Disease Screening
Interpretation of Celiac Disease Blood Test Results
Can I be tested even though I am eating gluten free?
How long must gluten be taken for the serological tests to be meaningful?
The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free
Is celiac inherited? Should my children be tested?
Ten Facts About Celiac Disease Genetic Testing
Is there a link between celiac and other autoimmune diseases?
Celiac Disease Research: Associated Diseases and Disorders
Is there a list of gluten foods to avoid?
Unsafe Gluten-Free Food List (Unsafe Ingredients)
Is there a list of gluten free foods?
Safe Gluten-Free Food List (Safe Ingredients)
Gluten-Free Alcoholic Beverages
Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?
Where does gluten hide?
Additional Things to Beware of to Maintain a 100% Gluten-Free Diet
What if my doctor won't listen to me?
An Open Letter to Skeptical Health Care Practitioners
Gluten-Free recipes:
Gluten-Free Recipes
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21 posts in this topic

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About two years ago I had the first blood test to screen for celiac disease which came back as a 'borderline' positive. Since I was on a long waiting list for the biopsy, and I was quite anxious for a result, I requested the gene test. This came back as negative, so the Dr said no I def didn't have it, so we cancelled the biopsy and forgot about it.

Since then I have cut back significantly on gluten, but not completely eliminated it from my diet altogether as I felt a lot better.

Fast forward till now and I'm now seeing another Dr about my still ongoing fatigue and also wanting to know why I'm always still so low in iron, even though I'm always taking good quality iron tablets (which are taken with vit c for absorbtion).

She decided to test for celiac disease (I didn't mention my previous testing). This time it came back a more clear higher positive, I don't think is was through the roof high, but it was a clear high ie not borderline at all.

She asked me if I was eating gluten normally, but because I've cut right down, I am now doing the gluten challenge and she is going to re test me in four weeks (I've been on it for two weeks).

Anyway, I guess I'm wondering about three things:

1. I'm aware that over time something has increased?? (ie the blood result has increased) wondering if that is indicative of celiac disease?

2. Is it probable that if the bloods were positive that I don't have it?

3. If the gene test was negative is it really possible?

Thanks for your help

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The chances of a false positive on a blood test are almost zero. Celiac disease does happen outside the main two genes (DQ2 & 8) but it's uncommon. The best thing to do would be to go forward with the testing (biopsy and gluten free diet). Do you know what all of your test results were? It would be interesting if you copied them over.

False positives on blood tests are practically unheard of. False negatives on biopsy and blood tests are fairly common though. If you have been gluten light that wouldn't stop the antibodies which is why your test was more strongly positive the second time around. No matter what the biopsy results are it would be a good idea to go strictly gluten free after the tests are done.

I'd be interested in seeing your DNA marker results. There are some unusual combinations of the DQ gene that result in receptor sites which will bind small fragments of gliadin and intiate auto antibody production. It's possible that the molecular serology test offered by Prometheus Labs may give more information about the receptor site than the genetic tests. I have found the Wikipedia articles about HLA-DQ and each of the DQ classes and subgroups to be informative.

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I'd be interested in seeing your DNA marker results. There are some unusual combinations of the DQ gene that result in receptor sites which will bind small fragments of gliadin and intiate auto antibody production. It's possible that the molecular serology test offered by Prometheus Labs may give more information about the receptor site than the genetic tests. I have found the Wikipedia articles about HLA-DQ and each of the DQ classes and subgroups to be informative.

Thanks Mari, I will try and get a copy of that test too, I might be able to pick up a copy today or tomorrow.

Only this morning I pick up a copy of my bloods taken two weeks ago, since being on less gluten. Comparing the results to the original ones taken two years ago, I'm a bit confused. Since the tests were done in two different labs, they results are presented differently.

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The gene tests for celiac and the gene tests for what they (medical researchers) are calling "gluten intolerance," are becoming more specialized all the time, as gluten intolerance gradually becomes recognized as a category to describe people who are sick from eating gluten, but do not seem to have the the "standard" genes for it.

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we have had several people here with half a celiac gene, and they only started testing for the alpha chains recently because there are some percent with half genes, like 6% I think I remember. Another 2% do not have any of the DQ2 or 8 alleles .

also, we have had some few here who were mistyped, one had a diagnosis and wanterd to check which genes she had because her son had DQ8 and DQ2, and her tests were negative for celiac!!! That is impossible. She phoned the lab and they sent te sample on to another lab and they found the DQ8.

Also, Enterolab found her DQ8 gene no problem.

When was your gene test done? Maybe it was done before they started testing the alpha chains.

Also, we have had at least two officially diagnosed celiacs here with DQ6.

I have DQ5.

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There are no identified "Celiac genes", there are only genes associated with the disease. This means you can test positive for these genes, but not have the disease, or you can have the disease, but not test positive for the genes. They are indicators, they are not diagnostic.

This is why I think genetic testing for celiac disease is a waste of time, for the most part. It can't tell you that you have it, and it can't tell you that you don't. Given the current testing, it can't even tell you if you might get it in the future, because no one tests for all the known genes associated with celiac disease and we don't even know all of the genetic elements which are associated with it (or how the association works).

You feel better with less gluten, your antibody tests show that you are producing autoantibodies to gluten: you have celiac disease.

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This is why I think genetic testing for celiac disease is a waste of time, for the most part. It can't tell you that you have it, and it can't tell you that you don't. Given the current testing, it can't even tell you if you might get it in the future, because no one tests for all the known genes associated with celiac disease and we don't even know all of the genetic elements which are associated with it (or how the association works).

You feel better with less gluten, your antibody tests show that you are producing autoantibodies to gluten: you have celiac disease.

Can I ask a question? I'm new to cealiac and am now gluten free. I feel very much better for it too. I was not one of the really bad cases like vomiting after a biscuit but I became malnourished. Do you think I could have like a Nan Bread or a Pizza once a month and get away with it or would that damage the villi?

Deano. If you have been dx as celiac, the answer is no. No gluten. Ever. For the rest of your life. Even if you have no visible reaction to it, your immune system knows it is there and it will begin attacking your body. If you eat even a tiny bit of gluten, your immune system will kick into overdrive for at least the next 3 months. You will set yourself up for many more problems, including other autoimmune disorders and cancer, if you cheat.

You have been handed the cure- a 100% gluten free diet. Anything less than 100% and you WILL have ative celiac disease and you WILL end up much worse off than you were. Damage may be permanent.

I'm sorry if this sounds harsh. But when people do not take my dietary needs seriously because they "have a friend/uncle/cousin" with celiac disease who can eat "a little bit of gluten and is just fine" it makes my life very difficult.

You have celiac disease. If you are going to cheat, even a little, you might as well just be eating gluten all the time. There are more important things then really good pizza. Find them.

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Had positive blood tests of Ttg. Have fatigue, slightly low on iron but iron supplements bring it up, bloating after eating. No real other sypmtoms. Not deficent in B-12 or Vitman D on blood work. Had scope and saw scalloping of the 2nd and 3rd duodenum. Biposy results have not come back yet. Had all three kids tested and all were negative.. they are 7,12,and 14.

Had positive blood tests of Ttg. Have fatigue, slightly low on iron but iron supplements bring it up, bloating after eating. No real other sypmtoms. Not deficent in B-12 or Vitman D on blood work. Had scope and saw scalloping of the 2nd and 3rd duodenum. Biposy results have not come back yet. Had all three kids tested and all were negative.. they are 7,12,and 14.

posting your lab results would be good....sometimes docs say "normal", when they are not.

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Can I ask a question? I'm new to cealiac and am now gluten free. I feel very much better for it too. I was not one of the really bad cases like vomiting after a biscuit but I became malnourished. Do you think I could have like a Nan Bread or a Pizza once a month and get away with it or would that damage the villi?

For a few years in the 90s, I didn't know better & was thinking what I could "get away with". There's a lot more at stake than just the villi. Celiac can affect every system in the body.

I think my health is affected to this day by that practice way back when. Symptoms can creep up so slowly they can be attributed to such non-alarming things as aging, instead of the occasional mostly non-symptomatic gluten.

Any celiac not 100% gluten-free is taking a risk bigger than they know, imho.

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For a few years in the 90s, I didn't know better & was thinking what I could "get away with". There's a lot more at stake than just the villi. Celiac can affect every system in the body.

I think my health is affected to this day by that practice way back when. Symptoms can creep up so slowly they can be attributed to such non-alarming things as aging, instead of the occasional mostly non-symptomatic gluten.

Any celiac not 100% gluten-free is taking a risk bigger than they know, imho.

I've seen my own GP. Now we having the other Antigen test. What other one. I thought I'd just had it. Get back to you when I know more.

I think you need to take a little time to learn about DH and celiac disease. Celiac and DH are technically autoimmune disorders. This is about DH:
https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/
Learning about celiac disease (overview):
https://celiac.org/celiac-disease/understanding-celiac-disease-2/what-is-celiac-disease/
Testing for celiac disease via blood test:
https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/
I think the full panel is around $400 and the basic budget screening which is pretty darn good (TTG IgA) is under $100.
If you are paying for your medical care (even under insurance) you have the RIGHT to copies of everything. So, when your doctor orders a lab test, ask for a copy of the order, so YOU know what he is ordering. Then you can google to see if he/she is ordering the right things. Get a copy of the results. Get a copy of the costs/receipt if you are paying out of pocket. Put your requests in writing.
I think some labs and doctors use the term for gluten allergy incorrectly. 1. There is a wheat allergy (IgE) that is like a peanut allergy which can cause anaphylactic reactions (throat swelling, breathing issues, drop in blood pressure). There are some blood tests that are about 50% accurate, along with skin scratch tests (also not super accurate. 2. There is celiac disease (autoimmune that when exposed to gluten attacks the intestinal track, skin or brain) triggered by gluten (I gave you the blood tests: TTG, DGP EMA). 3) Non-celiac Gluten sensitivity or Intolerance which is like celiac in terms of symptoms, but no antibodies are generated and intestinal damage does not occur. This diagnosis is reached when you have failed the first two as there are n tests for it.
Read through the DH section of this forum for symptoms and tips.
I hope this helps.
Finally, if you really suspect DH, you can always go gluten free. Keep in mind that you need to be strict and you need to adhere to the diet for at least six months to a year.

I mean I might get a prescription refill, or a new vitamin pill for example, and take it for awhile, with absolutely no symptoms. As we know, no symptoms does not mean no damage being done. I will feel fine for weeks, but then I start feeling awful, like a bad flu coming on. I never did get the intestinal symptoms others get.
This for me is the hardest part of having Celiac's, figuring out what did it. Last month I ended up with pneumonia because I thought the achey symptoms I was having was from gluten, maybe from cross contamination even though my kitchen is off limits to gluten, maybe from some new prescription, maybe from some new tea I was trying, maybe from new vitamins (marked gluten free but not certified, those have gotten me before), so I stopped taking all of that but didn't feel better and kept getting worse. It took me awhile to figure out I actually had a flu and by that time it went to my lungs and had to go to urgent care.

I think, at least from my personal experience, that these tests are accurate if you were diagnosed including blood work that was positive. All of the tests on my panel were positive by large numbers at diagnosis and over the next year, they went to very low normal for the ranges given. My GI symptoms were gone by then and the lingering neuro ones took longer to heal but they did. I would assume in a highly symptomatic Celiac, that resolution of symptoms, normalization of the blood work and weight gain would indicate healing. Whether I am 100% healed or not doesn't matter as my health is far better today than it was in my youth. I have not developed any more AI diseases than the 4 I already have and I call that a big win.
I think doctors do not take into account enough symptom resolution, weight gain for the skinny Celiac's or weight loss for those on the opposite end of the spectrum, as important markers for healing. I am not even sure if it is totally necessary for a person to heal 100% as there is overlap in the small intestine and nutrients are absorbed not in just one place, making it a brilliant design, when you think of it. If your health has improved dramatically on the gluten-free diet, along with the other things mentioned, then consider yourself healed well enough that you've regained your health back. Repeat endoscopy's are really for those still having problems.

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